So now that things have started to settle, or at least nothing else has happened yet to scare the uber crap out of me I figured now was the time to explain this whole experience, before I forget the major parts.
February 16th 2011 I went to bed determined to be “positive” and stop complaining about my life and that it would soon change for the better, that change that I had been waiting for , for 4 almost 5 months, happened about 4 ½ hours later. At around 430 am one of my nurses (Karen) came in and said “hunny they got you lungs”, honestly after that it is kind of blurry I think I went into complete shock. I remember calling alysse , poor alysse 430 in the morning getting me calling her freaking out. I just remember saying something like “ I got lungs, there giving me lungs”....I’m not even sure how the phone call ended cause I was so out of it. I also called my sister-in-law and apparently scared the crap out of her. I think I called a bunch of other people to, if I did I’m sorry haha I honestly can’t even remember. I also know I emailed everyone on facebook.
I barely remember packing stuff and how I somehow got to Toronto General, from St. Mikes. I remember the 2 transfer people asking me some questions but I was sort of in a daze. I didn’t realise that it took a couple hours for my family to show up, I’m not sure if I was just staring at the wall for a couple hours, I just can’t remember. I know I got an x-ray at some point and blood work but I can’t remember that either. I remember my family getting there and me not being able to eat. I remember having to take anti-rejection pills just in case the surgery happened and Iv meds being started. I remember just sitting around and waiting for hours hoping and honestly thinking “this surgery isn’t even going to happen”. I kept expecting them to walk in and call the whole thing off, but nope at about quarter to 3 pm the nurse walked in and said it was a go!
Total shock. Plus my brother was like 10 min off from the hospital so I had to call him and say that he wasn’t going to make it before surgery and that i’d see him after. Then I said bye to everyone and everyone was crying. I got on the stretcher and talked my surgeon (Dr. Andrew Pierre) into taking pictures of my old and new lungs! THANK U DOCTOR Then Colleen went down the elevator with me until she wasn’t allowed to go any further and we said good bye and she went one way and I went the other. Into the OR. It was kind of intimidating. People whacking around metal and dropping stuff isn’t exactly comforting when you know in a short period of time you’re going to be out of it and they’re going to be slicing you open like a black forest ham haha :P
Anyways I met the anaesthesiologist; honestly I can’t remember her name. Anyways she said they needed to put a line into my artery, so they duck taped (no joke) my entire arm to the metal OR table and then froze my arm then went on their way of trying to get blood from my artery. Apparently it didn’t work, so then they taped my other arm to the OR table and did the same on the other side. So at this point I couldn’t move and starting inwardly freaking out. And that’s when they decided maybe they should put me out. SO BAM mask was over my face, couple big breathes and all I remember is a bright light in my face.
I kind of remember waking up, but not completely. I remember people crying? I think. There was a lot of crying and family members upset. I mean I was hooked up to pretty much every machine you can be hooked up too. Breathing vent, feeding tube, chest tubes, IVs, catheter, pain meds, plus all the beeping machines to make sure I was still alive (gotta love it) add in a blood pressure cuff, o2 stat monitor stuck to your finger and a pain pump button and u got me, OOO and I forgot they also had white SUPER tight socks that went up to my thighs on to kept you from getting blood clots, with blood pressure socks that went over top and never stopped moving.
I was really out of it and the whole breathing tube down my throat, plus feeding tube and what else types of tubes down my throat it sucked. I’m not good at not being able to talk. I remember seeing people, talking to people but nothing is in the right order.
I remember having to get up and walk, though I didn’t realise it was only 16h post surgery. I was dizzy and drugged up, and getting up was just about the hardest thing I have ever done. I do remember saying something about rugby, like “this is nothing I played rugby”; I remember feeling really really really cold on my chest. And whoever said that you can breathe fantastic right out of surgery is a complete moron. I woke up and thought something heavy was sitting on my chest and thinking OUCH, where’s my pain pump? It wasn’t what I expected really. I didn’t realise you have to re teach yourself to cough because you just can’t cough anymore; you also have to teach yourself to breathe again. I couldn’t tell if I was breathing or not. I kept asking if I was breathing. “Am I breathing right you guys?”
My breathing was messed up though, I sounded like an old grandpa, very crackly. See you have to cough up all the surgical fluid in the lungs so you can breathe properly, but when you can’t cough anymore its really really really hard. Add in a huge incision and coughing just plain hurts! THANK YOU MORPHINE. Apparently my new lungs came with an infection, poor donor was sick before they passed away and I got there lung infection passed to me. So I was having a lot of problems breathing so they decided they needed to put the breathing tube back in and back on to the vent. I just remember asking “am I going to remember this?” and they said “No”, gave me a shot of something and I was out.
Then the tube was back in and I was back to being drugged up. Colleen said it was hours later that I woke up, though I thought it was just an hour or so later...it was about 8 hours. I remember Colleen being there a lot, though hours and days meant nothing to me, when I found out I’d already been in the hospital for a week I was in shock. I had been that out of it. They give you a pain pump and thank god for it, every time they moved me I’d just hit that and feel nothing. Honestly I didn’t feel much I numbed it all out. It got to a point where I was getting hot and itchy and apparently that’s signs for morphine overdose so I stopped using it as much.
The nurses in the ICU are amazing. I mean they were balancing my 8 IV pumps; usually one is a pain, but 8...insane, all meds going at different rates and has to be mixed certain ways. They also basically have to treat you like a baby and do everything for you, even though you don’t want them to. Or I didn’t anyways. They were good though, even with all the tubes they let me wash my mouth out every day, sort of brush my teeth, they tried to wash my hair...but I don’t want to talk about it lol it was a bad experience and I actually yelled at a nurse VIA Paper and clipboard. Let’s just say that night I was coherent and what she was doing made no sense to me, but I’ll stop there. They are amazing, loud and I seriously think after hearing so many of them freak about their break times that they might need an extra break every now and again. It’s funny because I was really drugged but I remember some of what was going on. I know I watched movies in the ICU, though I can’t tell you which ones they were, no clue. Also one of my nurses, John put a radio in my room and put it on 90s and 80s music lol , sooo that’s what I was listening to for a while. I am happy I slept most of the time in the ICU, it wasn’t an experience I think someone wants to remember. I mean having someone suction out your lungs while your awake, not kool, not a fun experience. Though I guess it had to be done.
Anyways I was very dizzy after surgery and I didn’t have any spatial sense. It felt like I was on a tilt-a -whirl all the time, I seriously thought my hospital bed was moving. It felt like spinning. It was crazy. But given I was on 8 IV pumps, all pumping liquid into my body at the same time, something weird had to happen. I do remember everyday something new disappearing. An IV pump here and there, an iv sight, stuff got better slowly.
I’ve realized that I really hate people looking after me. That I love being clean so if I can’t shower or even have a bed bath I get really cranky and being able to see the bathroom 3 feet away but not being able to use it is just annoying. Chest tubes suck. Because there on both sides of your bed so before you go anywhere 4 chest tubes have to be put somewhere, add in the 8 IV pumps, oxygen , and blood pressure socks and trust me you’re not going anywhere fast. I guess that was my problem when I got to the step down unit after getting out of the ICU. I didn’t know what to do. You see with CF there was always a plan, you were never just sitting around, with transplant there was no plan, the plan was you were suppose to sleep, eat and walk around and that was it. Except no one said this so I didn’t know if I was supposed to be doing something, so I kept asking “what am I suppose to do”, no one really ever answered that question lol.
I remember having to argue to get my CF enzymes when they put me on real food. Take a CF patient, who can’t digestive food without pills, put her on a liquid diet for a week without pills, put back to food but still without pills, and mess up her diabetes and you have Allison not such a happy camper. But I argued and got my pills back, at this point my stomach was killing me because of not having my pills for that long and them still trying to feed me. OUCH. But they just kept saying “that isn’t our main concern”, soo ok true guess making sure my lungs work is more important than food. I was dizzy the day they sent me over to step down unit, though and I found out later it was because I had been complaining my stomach hurt so apparently I had an ultrasound...totally don’t remember that. I hadn’t been fed in 2 days that was why I was dizzy. I also ate tons of Ice chips, I couldn’t get enough.
The step-down unit was different. In the ICU there were always 2 nurses, one for each patient and someone was always there, step-down there was 1 nurse for two patients and you had some freedom. I was still in a glassed in hospital room, which I found out I hate haha, no privacy with that one, not like I cared at that point. Step-down confused me because there was no layout of how to get from step-down to the transplant floor. You just had to wait and see if they docs thought you were healthy enough. My day consisted of getting blood taken before 630 am, going back to sleep for a bit, being woken up at 730 when the shifts switched over and the nurse coming in to do vitals. Then I’d pop my meal of pills lol, then eat breaky, wait for the docs to do rounds, and then that was it for the day. I’d wait for my family to show up, or id go back to sleep for a bit, because you see step-down doesn’t have TV so I was literally staring at the wall.
I had trouble eating after surgery. I chocked a lot, which I never do but I guess with my throat being so irritated it just happened. Lots of pillow holding in these weeks, 4 chest tubes are uncomfortable, you can’t lie on your sides at all so you constantly on your back, I also found sitting for certain periods of time in that chair they give you, hurts after a while. Step-down was basically boring for me, I just wanted to get downstairs and do stuff lol. In step-down they took 2 of my chest tubes out and I was SO happy. Then they told me I had a hematoma in my right lung,... so blood in the chest cavity not so kool, so I had many x-rays, ct scans and I even had a bronch. During all of this I was put down to the transplant floor 7; where they decided that I did have blood be hide my right lung and that because of all the old CF germs and my old lungs popping so much that they had to put another chest tube in the front of my chest. I wasn’t thrilled. So one of my docs in my room, got a big needle frozen the front of my chest and then stuck another tube in the front of my chest, right next to my port :P It still hurt, he missed a bit, it’s not an experience I would like to relive anytime soon. Other than that 7 was boring too, I guess entertainment isn’t anyone’s main concern and it makes sense. My first roommate was slightly irritating. Given she was a very old lady, but she was making herself sick. She wouldn’t walk around so then because she was just sitting in bed all the time she was getting weaker and weaker, and then she didn’t like using her call bell, instead she’d just start yelling “NURSE, NURSE” over and over again until someone came...her doing this at 2 am didn’t make me like her all too much.
I was really happy when she got sent home. My next roommate was a couple years older than me, had also gotten a lung transplant in the past but was having other organ issues so that’s why she needed to come in. But she clearly just like me had been in the hospital a million times and had packed everything she needed. You can tell “professional patients” when you see them lol. Your curtains are closed to how you want them, you hook up your tv and phone in a matter of minutes of getting into the room, you have earphones for the tv, you also have a suitcase with extra pillow, blanket, sweaters, extra food, credit cards, cell phone and if you have one, a lap top. You also know how to talk to doctors. So when I saw this women walk in with all this I laughed and new we’d be good roommates. We both liked our own privacy, quiet, and didn’t get in each other’s way.
Hmm other than that 2 weeks later the docs said I was doing “incredibly well” minus that first infection I got and the blood behide my lung I was great. So they took all the chest tubes out and for a day or two I had my self med classes to make sure I didn’t overdose or not understand my meds completely and then randomly on a Friday they walked in and said “ ya you can go home today”, which was funny cause I didn’t have a coat or anything so they actually let me stay an extra day till my parents could get all my stuff.
The first time I got home I almost fell on my face walking into the house. I forgot all about stairs. I couldn’t do stairs at all! You’d be surprised how much muscle mass you can lose in the hospital in 2 weeks. Other than that I got all my staples out, I check my temp and everything ..everyday , I have enough hand sanitizer to freak out any healthy person and I own some med masks and I have been wearing quiet a lot of because people are just gross and sick and I’d rather not getting some scary virus right after all this. Without an immune system is scary, but I do think its funny that everyone is so scared of prednisone, I’ve been on this med for 5 years, my immune system has been low for years..soo I guess I’m not as scared just because I’ve been doing this so long already. I also had to get my medic alert bracelet haha there going to have fun reading that one. I have no idea how they’re going to fit all that stuff on there. It took me forever to do it. “Cystic fibrosis, Cystic fibrosis related diabetes, cystic fibrosis related liver disease, immunosuppressed, double lung transplant” haha try fitting that on a small chain...plus I needed to tell them all my meds...funny. I also have a t-shirt coming in the mail that says “ recycled parts, transplant recipient” I can’t wait.
I know there’s still going to be bumps in the road, but so far I don’t have rejection or infection so I can’t complain. Life is good. I can’t believe all this actually worked out for the better; I honestly didn’t think it was going too. That transplant came just when I needed it. When I was starting to give up and was running out of energy to fight it anymore. I had months left, not a year. My lungs were just too weak and damaged and they collapsed all the time. I’m happy that someone out there signed their donor card and they saved me
